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Electrical device implant

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Electrical device implant Empty Electrical device implant

Post  sherri b Thu Sep 13, 2012 9:07 am

Anybody heard of the new electronic device they implant? this is 2 wires in your forehead, and 2 in the back of your head with a long wire running down your back (all inside) to your waste hooked to a device that is planted 4 inches deep at your waste. I will have a remote that I can control how intense of a vibration and the the type of vibrations, they can vary. then I will also have a battery charger to wrap around my waste to charge the device. The device is good for 10 years.

My neurologist is not for this at all when I asked him. He said they have not perfected it enough for him to say yes yet, chance of infection, and the wires being loose inside you can move around.

There is a man in my area who had migraines and has it implanted who is suppose to call me and talk to me about it. The dr. said it is really working better for headaches than the back ache and leg problems it was invented for! Migrainers know imediatly if it's going to work or not!

I feel like I at least owe it to myself to check it out and do the trial. Which they told me you are awake for, and is very painful, but quick. You just get a local and are awake for the trial, but if you choose the permanant you go in the hospital and are put under. It is good for 10 years once they implant it.
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Post  sailingmuffin Thu Sep 13, 2012 9:31 am

Hi,

I have an occipital nerve stimulator in and it has helped me a great deal. Mine was originally implanted at Jefferson- (the neuro at the Headache Center there suggested it because I had good responses to nerve blocks and bad ones to medication.) Mine was put in between clinical trials. I had the option of being in the trial, but I chose not too because I lived so far away.

I had a ten day trial of the device. It was surgically implanted and I was put under for it. During the trial, two electrodes were implanted in the back of my head and ran down to a device I could wear as belt or a necklace. This let us know what settings would work best for the device and if it would work at all. It made a huge difference for me. After ten days, they took the temporary electrodes out. (This was done in the neurosurgeon's office.) I then went home for a few weeks and let everything heal. About a month later, I had it implanted permanently.

The original surgery was done in 2004, though I did have a battery change and a lead fracture in 2005. The extension- the part where two wires meet in my shoulder wored out and had to be fixed in 2007. I also broke both leads fainting and they replaced the entire thing in 2010. All surgeries, save the 1st lead revision were done by the same neurosurgeon. He practiced at Jefferson and now practices in Denver. He is really great and I would be happy to give you more information or even talk via phone if you want to. (Send me a PM)

For me, the nerve stimulator has been a godsend. It led to one period of remission. Now, the main thing it does is keep the headache down enough so that medications will work. With the stimulator, I do not have to be on as many meds. Without it, high dose pain meds and steroids were all that helped. There are pros and cons to this. But for me, I would do it again in a second if asked to make the same choice today.

I hope this helps.

Pain free days,
sailingm
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Post  sherri b Thu Sep 13, 2012 12:56 pm

Wow, that does help and thank you.

So are you wearing one now?

I am very sensitive to drugs, can not tolerate much of anything but the imitrex.. That is why I am so bad, I can't take any of the preventatives.

I will probably do the trial then go from there, providing my insurance company will pay. I could not afford it otherwise.

Wishing you the best.....
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Post  tecky Sat Sep 22, 2012 8:51 pm

Sherri,

I'm watching the two gals getting the final surgery in Transforma procedure in Houston, TX, this week. I've been watching with fascination and becoming a believer. I haven't made up my mind yet, but I've been battling so many other issues as side-effects with the migraines that I'm getting close to being ready to try this.

The only obstacle will be my insurance and the cost of flights and hotels from Montana to Houston for the preliminary and final procedures. I'm already traveling to Chicago for doctor appointments at least twice annually, so it's not going to be that much more.

Excited to hear how Melissa and Alejandra's experiences play out as they recuperate from their surgeries. To be able to decrease the number of meds I'm on would definately be a great improvement.

bounce
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Post  sherri b Sun Sep 23, 2012 3:47 pm

Becky,

I am getting it done right here in my neighborhood. New Castle Pa. Would it be cheaper for you to travel here?

You could stay at my place!

I can understand though, it will take a few trips....

I went for the consultation, then have a psyc evalutation, then the trial, then the permanent. So you would probably have at least 2 trips to make huh?

I am just waiting for the dr. office to call with my psyc appt. after that I will know if insurance will pay and go for the temporary....
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Post  tecky Sun Sep 23, 2012 4:28 pm

Sherri,

That's so very kind of you. Thank you so much.

Right now I'm trying to heal from sinus and bladder infections, bronchitis, and I'm not sure what else. So once I get this resolved, I'll be considering other alternatives.

I see my doctor in Chicago in late October, and I'm going to talk to him about it. I have a feeling he will discount it right away, but.... Everything is a long trip from here.

Thanks so much. I'll keep in touch with you.
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Post  Laura Mon Sep 24, 2012 10:09 pm

I just posted a new discussion question about this subject - then noticed your comments here. My doctor has recommended a peripheral nerve stimulator to me. My pain is in my face (the trigeminal nerve) rather than the back of my head (the occipital nerve). I travel to Houston to see her - so she is supposed to be looking for a doctor closer to my home to do the procedure because she says there is a lot of back and forth to get it fine tuned.

Have you found any good articles written that describe the procedure and the outcomes?

Laura
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Post  sherri b Tue Sep 25, 2012 7:13 am

Laura,

I haven't found any articles on it. When I went to the dr. the representative from St.Judes where it was invented was there, she had a device and the wires with her and showed them to me. She explained the procedure a little bit. But I will of course ask for more details when I go for the temporary implant.

I'm not sure where you can get more information. Maybe if you google it, I'm sure there is something on U-Tube.....

I did speak to a man in my area who has the permanent ones in now. He said he contacted St.Judes and they sent him out a packet with a list of Practitioners who do the procedures. That is where I would start if I were you. I was just fortunate enough to have a dr. right in my area that performs it.

Hope this helps, and good luck! I will try to keep you updated on my progress...

Sincerely,
Sherri B!
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Post  tortoisegirl Tue Sep 25, 2012 8:31 pm

Medtronic is another implantable battery maker that can be used for these, often referenced in spinal cord stimulation. The Reed migraine clinic is doing a lot of these. They most often do leads to the occipital plus either supraorbital or temporal nerves. They are based in Dallas but are working with doctors in numerous other locations, to do either the trial and refer to Dallas, or do the trial and permanent procedure. There should be some good options for this around the country, but their experience doing it specifically for headache varies.

Plus, insurance is a big hurdle. Another more general name is peripheral nerve stim. In addition to contacting the manufacturers for a list of doctors they work with, a local pain clinic will likely either do them or be able to point you to someone who does. From what I've read, for headaches, it seems the two main routes are a neurosurgeon or a pain specialist / anesthesiologist. Best wishes.

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